Autism Research Studies

Researchers at Northern Illinois University are looking for parents of children who have autism spectrum disorder (ASD) between kindergarten through fifth grade. This study will take 7 weeks to complete.  At the beginning of the study, you will be randomly assigned to either complete six, online mindful parenting sessions focused on mindfully interacting with your child (which means being present in the moment with your child) or to a control group, where you will not initially do the mindful parenting sessions.  At the beginning of the study, everyone will be asked questions about yourself and your relationship with your child with ASD.  Those immediately assigned to do the mindful parenting sessions will complete one 60-minute session each week for six weeks. Seven weeks after you have agreed to participate (and have completed the last parenting session for those in the intervention session), everyone will be asked to complete a similar set of questions. Those in the control group will be given access to the mindful parenting sessions after the completion of the second questionnaire, if they are interested in experiencing the mindful parenting sessions on their own time. Participants can earn a total of $50 for participating in the study ($15 for the first survey at the beginning of the study and $35 at the end of the six weeks, which will be paid through PayPal; we can give you instructions to sign up if you don’t already have an account).

  
Eligibility Criteria:
• Must be at least 18 years old
• Must live in the United States
• Must have at least one child diagnosed with autism spectrum disorder (ASD)
• Child with autism spectrum disorder must be in kindergarten through 5th grade
• Child with autism spectrum disorder must live in the same home as the parent
• Must be able to read and write English 

Please contact Emily Padgett, at mindfulparentingASD@gmail.com if you are interested in participating or have additional questions. You can also click on this link to take the screening questionnaire: https://niu.az1.qualtrics.com/jfe/form/SV_aahnDsVjXBDHSSx

The screening questionnaire ensures you meet the requirements necessary to participate in the study. The screening questionnaire will take approximately five minutes to complete and will ask you questions about you and the circumstances of your life. After you complete the screening questionnaire, you will be informed whether you qualify to participate in the study. If you qualify, you will either be randomly assigned to either complete six weekly, online mindful parenting sessions and answer two sets of questionnaires or you will be assigned to the control group. In the control group, you will answer two separate questionnaires, seven weeks apart. You will receive more information about each group once you respond to the screener and qualify for the study. If you complete the screener, you are not obligated to participate in the study. Click the link above to be directed to the screening questionnaire.

 

Northwestern University- Family Genetic Study of Language in Autism

This research study explores how key developmental, behavioral, and neural features may relate to skills in autism and be heritable in families. Our goal is to inform the causes of autism, and to understand how the genes involved in autism may play a role in language and other important skills.

STUDY OBJECTIVE: To understand the brain and gene basis of language and related skills in individuals
with autism and their family members
IMPORTANCE OF STUDY: Involves the use of exciting and innovative technologies for studying language and social features; Helps us further understand genes related to features of autism
WE ARE LOOKING FOR: Individuals with autism, their parents, and grandparents of any age; Individuals without autism
PARTICIPATION INCLUDES: Solving puzzles; Completing measures of brain activity; Talking about your friendships and the ways that you relate to other people; Providing a blood sample
COMPENSATION AND TIME: Participation involves either 1 or 2 visits; Participants will be compensated for their time

Researchers at the Neurodevelopmental Disabilities Lab at Northwestern University are conducting a research study funded by the NIH to explore how developmental, behavioral and neural features may relate to skills in autism and be heritable in families. In particular, the research team is looking for individuals who grew up in Iowa and think they may be related to someone with autism to participate in their study, such as parents and grandparents. This is because they study how performance on the Iowa Test of Basic Skills (ITBS) may relate to autism symptoms in the next generation. Through this work, they are learning more about how genes associated with autism are inherited through generations and may relate to different language and cognitive skills.

If you or someone you know may be interested in participating, please contact the team at 877-275-7187 or familystudy@northwesternedu. You can also visit their website http://ndl.northwestern.edu to learn more about their work!

 

Ohio State University- Neurdiversity & Participation in the Decision-Making Process

We are reaching out to you for help in disseminating the survey among adults with autism/autistic people 18 years and older. The survey asks adults 18 and older with autism about their experience participating in public events and decision-making processes.

The IRB authorized the research, the Study Number is 2019B0545.

This is the link to the survey:
https://osu.az1.qualtrics.com/jfe/form/SV_e2v2GEJz5SoLPcF

The research goal is to measure the characteristics of inclusive participation in the decision-making process. We are asking about past experiences and expectations for the future.
This survey far-reaching goal is to help adults with autism to advocate for their needs for inclusive decision-making processes.

Incentives: 
There will be a chance to win in a lottery to get a gift card in participation in the online survey. Opportunities to participate in drawings will be provided to all eligible participants. They will be entered into a drawing for one of “1 of 6” $50 gift cards for Target. A total of 6 cards will be distributed.
By law, payments to participants are considered taxable income.

 

SkillFlix for Parents- Autism Spectrum

• • • engage in an audio recorded conversation with their child on a pre-determined topic related to healthy relationships and sex;
    • watch the parent/child interaction videos;
    • engage in a second audio recorded conversation.

 

University of Iowa – New Treatment Technique Clinical Trial
Researchers at the University of Iowa are looking for participants to take part in a clinical trial investigating the use of a new treatment technique. Our team is interested in understanding brain activity and cognition in those diagnosed with Autism Spectrum Disorder. Our trial includes 5 days of treatment and compensation is provided.
If you are 18 years of age or older and interested, please contact:
Laren Garrett, Study Coordinator
Office 319-353-8557
E-Mail: CT201610712@GMAIL.COM

 

University of Iowa Children’s Hospital Autism Center – Behavioral Treatment Using Telehealth for Children with Autism – Division of Pediatric Psychology, Center for Disabilities and Development, and Department of Psychiatry

A Treatment Research Opportunity  We are currently accepting referrals for participants in a research study on Behavioral Treatment Using Telehealth for Children with Autism. This study is funded by the National Institute of Mental Health. Scott Lindgren and David Wacker, faculty members in the Stead Family Department of Pediatrics at the University of Iowa, are the principal investigators for this study. Todd Kopelman, Kelly Pelzel, Matt O’Brien, Wendy Berg, and Linda Cooper-Brown are co-investigators at the University of Iowa. Nathan Call is the lead investigator at the Marcus Autism Center at the Children’s Hospital of Atlanta, and Dorothea Lerman is the lead investigator at the Center for Autism and Developmental Disabilities at the University of Houston – Clear Lake. Children in Iowa, Georgia, and Texas will participate in the study.

Purpose of the Research  The primary purpose of this research study is to evaluate the effectiveness of functional analysis and functional communication training, which are applied behavior analysis (ABA) procedures, in decreasing problem behaviors displayed by young children (ages 18 months to 6 years) with an autism spectrum disorder (ASD). All behavioral assessment and treatment procedures will be conducted through telehealth coaching for the parents using internet links to the family’s home. The study will compare whether different approaches to scoring and analyzing behavior observation data produces the same positive outcomes. One approach to treatment will include a more streamlined behavior assessment procedure and less extensive data scoring and coding of the behavior that is observed in weekly telehealth sessions. Half of the children will be assigned randomly to each of the two treatment groups. All children will receive active treatment; there is no control group that receives only a “placebo” treatment.

Study Procedures  We plan to include 50 children at each site over the course of this 4-year project. All children who participate in this research study will be displaying problem behaviors (e.g., tantrums, non-compliance, aggression, self-injurious behaviors) at the time of their inclusion. Each child from Iowa will be evaluated by research staff at the UI Children’s Hospital in Iowa City to confirm that they meet the diagnostic criteria for an ASD. As part of this evaluation, parents will be interviewed about their child and asked to complete checklists about their child’s behavior and about their own levels of stress and mood. Following confirmation of an ASD diagnosis, a behavioral evaluation (functional analysis) will be conducted in the child’s home. Parents will receive coaching on procedures via a video conference from a behavioral consultant located at the UI Children’s Hospital. A computer for teleconferencing and a connection to internet service will be provided for those families that do not already have these services available. Following the behavioral evaluation, we will then train parents to conduct a treatment called functional communication training (FCT), which has been reported in the scientific literature to be effective for many children. The behavioral evaluation and treatment will typically last for up to 6 months for each child. We will also check back with each family 6 months after treatment has been completed to see how the child and parents are doing and to complete a video observation probe. Families will be reimbursed for the cost of travel to attend the initial evaluation in Iowa City at the start of the study. There will be no costs to families in the study other than their time to participate.

Data Collection  We will make video recordings of all observation sessions. These recordings will be stored on a password-protected server and will be erased at the end of the project. We will also have parents complete several checklists during the study. All information collected as part of this research project will be kept confidential.

Making a Referral  If you are aware of any children who have an ASD, who are between 18 months and 6 years – 11 months of age, who engage in problem behaviors, who live in Iowa in an area that has access to high-speed internet, and whose family might be interested in the project, please have the family contact Todd Kopelman by phone or email at 319- 356-2491 or Todd-Kopelman@uiowa.edu. A copy of the Informed Consent Document, which provides additional details about the study, is available for review. Thank you for your interest in this study. Please do not hesitate to contact us with any questions or requests for more information.

 

University of Southern Mississippi

• Parents of children and adolescents ages 7-17 are invited to participate in a research study examining parenting strategies, parental stress levels, and their child’s behavioral presentation.
• Parents are invited to participate if they have a child with:
  • Autism Spectrum Disorder (or Asperger’s Disorder or PDD-NOS)
  • Attention-Deficit/Hyperactivity Disorder
  • No developmental, behavioral, or emotional diagnoses
  • (Please note: If the target child has any siblings who live in the household, those siblings must not have been diagnosed with or suspected to have any developmental, behavioral, or emotiona diagnoses)
• Parents will complete questionnaires via a secure, online website.
• This study has received approval from The University of Southern Mississippi Institutional Review Board.
• Please contact Elizabeth Fair at elizabeth.c.fair@usm.edu for more information or if you would like to participate.